Thursday, December 31, 2009

In the year 2000, I was a senior in high school. There's me all ready for prom-- wasn't I ridiculously fresh-faced and cute? I planned to join the military after college, travel the world, and not marry or have any children until I was at least thirty and had a doctorate degree. We can all see how well that worked out.

Now ten years later I've been married for five and a half years, been a mother for three and a half, still haven't started my masters but have received a BA in English and a stellar education in extremely rare medical conditions, and have performed mouth-to-mouth resuscitation over thirty times. I've been to Ireland, England, Canada, Mexico and Belize-- a sad total of one new country every two years. I've attended twelve weddings and eight funerals, moved five times, and owned three cars and one house. I've read over three thousand books and been published twice. I've seen the interior of my husband's left calf and the adrenal gland of my son. I learned how to do needlepoint and sign language (though not at the same time). I adopted two cats, one frog, one snake, and one enormous tarantula.

Jeremy in 2000 planned to join the Marine Corps and was waiting to see if he'd be accepted to college or if he would enlist straight out of high school. In ten years he expected to be an infantry enlisted man or officer (still in the Marine Corps), unmarried, and that was about the extent of his planning. You can see that worked out pretty well for him, too.

He graduated from high school, got married, commissioned into the army, became a father (Jeremy says he impregnated a woman but this is my blog so I get to say it how I want to), moved, got promoted twice, deployed, got half-blown up, came home a bit worse for wear, and learned how much fun it is to drive a wheelchair down a grocery store aisle at high speeds. He has been to Canada, Mexico, Belize, Iceland, Germany, Kyrgyzstan, and Afghanistan and has been admitted to six hospitals. He's had eight surgeries and broken five bones. He's played over 7,000 hours of World of Warcraft (which is kind of scary but probably less than the amount of time I've spent reading books), owned three cars, and consumed about twenty alcoholic beverages.

Connor spent the first six and a half years of the decade as a twinkle in God's eye. Then he rapidly made up for lost time. In the past three and a half years he's had four major surgeries, five stints in the ICU, two months of in-patient time, over 200 doctor's appointments, and been admitted to five different hospitals. He's been under anesthesia seventeen times. He's learned fifty-eight signs, how to lift his head, sit on his own, eat solid food, and stand with help. He's graduated from early intervention and started preschool. He's owned zero cars and been to zero other countries. Glad to know someone is behind me on the amount of traveling they've done.

We don't really do New Year's resolutions around here. As Jeremy puts it: "Why would you wait until December 31st to make a resolution?" But I do have one wish for the next ten years. I hope it's sort of boring.

No really. I'd like to look back in ten years and write things like "I organized my Tupperware collection" and "I won an award for prize-winning petunias." I mean, I'm okay with a few exciting things happening, like Jer walking again and Connor walking for the first time and us adopting another kid and moving into our first non-rented domicile, but I'd rather skip the other drama that tends to follow us around. You know, drama that includes things like explosions, bleeding, people turning blue, emergency rooms-- the list goes on. With any luck we'll be able to look back on the first decade of the new millennium as our "wild twenties" and our thirties will be much more sedate.

Wednesday, December 30, 2009

This morning we drove to Jeremy's first physical therapy session. Basically it was an assessment where the PT asked about Jer's medical and surgical history, took a close look at his feet and leg, and talked a little bit about what he's already doing. Then we set up appointments for the next month. Jer will be going to physical therapy there three times a week and also continuing with his exercise regime at the YMCA. We're hoping in another month or so he'll be able to start using some forearm crutches and will be able to get out of the chair! Hopefully with the amount of work he'll be putting into building back up muscle and improving flexibility we'll see some quick results!

And that, if you are not interested in hearing about poop, is the last paragraph you should read in this blog entry. Really. Go look at pictures of cute kitties or something instead of reading on.

You can't say I didn't warn you.

Over the last couple of days Connor's appetite has dropped off, and when he started throwing up this morning I figured that the problem might be, joy of joys, impacted bowel. You can read more about this scintillating topic by googling it, but I'm not going to go into too much detail. At any rate, I donned my trench coat and fedora, took a trip to a Walgreens I am now never planning to set foot in again, and bought another pack of pediatric enemas. The day just went downhill from there.

At any rate I believe that I might have solved the problem, though if things don't clear up in the next few days I may need to bring him in to make sure he doesn't also have some sort of infection going on. There are many, many things I didn't realize I was signing up for when I became a parent. Sticking various medically recommended objects up my son's rectum is definitely one of those things that was not mentioned in any parenting book I remember reading. There are a number of other things I don't remember seeing in there, too. I believe I may slip an addendum in the back of What To Expect The First Year.

We could title it Chapter Twenty-Seven: When Things Go Horribly, Horribly Wrong. We could break it up just like the rest of the chapters, each section dealing with appropriate topics. I'm picturing something like this:

FEEDING YOUR BABY: Unconventional Diets

Determining The Nutritional Content Of Things Baby Ate Off The Floor * Cat Food As An Important Source Of Protein * What To Do When Baby Decides To Only Eat Things That Are Purple And Start With The Letter W * Identifying Things You Remove From Baby's Mouth * Proper Treatment Of Laundry Stains After Baby Eats An Entire Box Of Crayons

WHAT YOU MAY BE CONCERNED ABOUT

Baby Smears Poop In Your Hair In A Public Area * Proper Disposal Of Spit-Up After You've Caught It In Your Hand * Enemas As Weapons Of Mass Destruction * Baby Throws Poop On The Ceiling * Baby Throws Up On Santa Claus * Baby Learns The F Word And Thinks Your Reaction Is Funny * Removing Small Objects From Baby's Nose

WHAT IT'S IMPORTANT TO KNOW

Proper Toxic Waste Disposal * The Gas Mask As Fashion Accessory * How Much Ben And Jerry's Ice Cream and Hard Liquor Is Required After Baby Goes To Sleep To Erase All Memory Of The Previous Events Of The Day

I am especially fond of the last entry under "What It's Important To Know." There'd be a handy trauma scale showing correlation between events that occurred during the day and the corresponding type of ice cream flavor and variety of alcohol required to achieve proper amnesia. I believe this evening would probably rank somewhere between Cherry Garcia washed down with shots of Vodka and Chunky Monkey with Everclear. Since I don't really drink I'd just have to double the amount of ice cream I'd eat to achieve similar results. What else should go in this addendum, do you think?

Um, anyway, I got way, way off topic there but the point I'm trying to make it that it was not a particularly fun day for me. And I'm pretty well 100% sure it was not one of Connor's best days either.

Tuesday, December 29, 2009

Connor is still, sadly, feeling a little under the weather. He has been experiencing some GI issues, and when I say GI issues, I mean Rabid Martian Tooties of Death, along with other problems in the diaper department too disgusting to mention. Other than his incredible toxic waste output and a tendency to tire more often than normal he seems to be feeling okay though, so hopefully this will be over really, really soon.

Either that or I'm going to have to start stocking up on gas masks.

In other news, Jeremy has his assessment appointment tomorrow with the physical therapy center that's going to be doing his aquatic therapy! We are extremely excited about this; while Jer and I have been going to the YMCA five days a week and he's been swimming, biking and weight lifting there, he doesn't have any specific exercises to do in the water to help improve his flexibility, balance etc. so it will be great to have a professional giving him some of those to do. Hopefully in another couple of weeks he'll be able to use the parallel bars and actually start practicing walking out of the pool! I'll be sure to bring my camera when he starts that up so I can record the moment for posterity.

Monday, December 28, 2009

Here's a quick blurb that I forgot to mention about yesterday's workout but that I thought I'd share with you all.

As Jeremy and I were sitting on the bikes, pedaling happily away, two boys who were probably around ten years old walked around the corner and saw us. They stopped dead in their tracks and stared at Jeremy.

"Is that your wheelchair?" one of them said."Yep!" Jer replied."And you work out?""Yep!""WHOA!" said the kid, his eyes wide in amazement. Then his buddy elbowed him and they kept going.

I'd like to see that kid discover wheelchair basketball, but then I don't know if his little heart would stand the shock.

Sunday, December 27, 2009

Jer and I went out on a date today, which was really nice! First we drove to the Y and worked out side by side on the bikes. It was nice to do an exercise that we could talk together while performing; swimming, while a good workout, doesn't exactly lend itself to conversation. From there we went to a new sushi restaurant just down the road. It was one of those ones with the conveyor belts where the chefs stand in the middle and make a bunch of sushi, put it on plate color-coded by price, and then you just take what you want off the belt and at the end of the meal they count up the plates to give you your bill. Jeremy and I had never been to a sushi restaurant like that, and we really enjoyed ourselves! We got to try a few new kinds we hadn't tasted before, and the bar was the perfect height to pull Jer's wheelchair up to. We had a great time and I'm sure we'll be going back.

After that we drove to the bookstore, of course. I mean, what else would we do on a date? We normally go to a coffee shop after the bookstore and sit holding hands, drinking coffee (Jer) and tea (me) and reading our books, but it was a Sunday night so everything was closed. We ended up driving around for forty-five minutes just talking and then going back to the house an hour early because we couldn't think of anything to do. The only thing open on a Sunday night is the bars, the strip clubs, and the casinos, and Jer and I aren't really bar or strip club or casino types of people. Perhaps we are extremely boring, but I think we're pretty happy with being boring so it really doesn't matter. Oh well.

While we were on our date, Connor was out seeing the Fantasy Lights At Spanaway Park. Apparently he was totally obsessed with the Christmas tree, to the point of not wanting to look at anything else around it. Why am I not surprised? It took him a little while to get into the other lights, but according to Joanna by the end he was totally enthralled, and it took him a while to calm down when they got home because he was so excited by all the colors and motion. I'm glad that he had such a good time; maybe Jer and I will have to take him ourselves so we can check out the display and show it to him again!

Saturday, December 26, 2009

Today was an absolutely beautiful day! We drove over to the new house in the afternoon so that I could do a little work outdoors on that terrible ivy, as it was an absolutely perfect day for it, and I brought the camera along. I thought I'd show you just a few pictures of how things are coming along inside the house with some "before" shots and some "present" shots. You can really start to see what a beautiful home it's going to be!

And of course the really great things about it is just how accessible it will be for wheelchairs; already it's much, much easier for Jer to get around the house even with all of the construction lumber and debris. The doorways have all been widened now, the sunken floor eliminated, the carpet removed (though the laminate floors haven't gone down yet) and the layout has been changed in minor ways to make it much more wheelchair friendly. We should be able to have anyone and everyone over at our house-- how great is that? But I digress; on with the pictures!

We'll start with my favorite room in the house.

From dining room . . . to library! I'm a little giddy just thinking about it! The shelves are absolutely gorgeous and they haven't even been painted yet. And check out that new window-beautiful!

The kitchen is coming along quite nicely as well-- no more sunken ceiling, huge box light fixture, or two-decade old appliances.

Aren't those gorgeous cabinets? I can't wait to see the finished kitchen!

Here's the former family room.

This will now be our dining room! I love the paint color on this wall; the picture really does not do it justice.

And of course the living room.

The sunken floor is gone, there's a gas line that's been run in, the new fireplace is being built right now (that big indentation is for a massive TV-- Fraggle Rock will never have looked so good!) and there are more exciting changes on the way!

Not pictured here are either of the bedrooms, the office, the bathroom, or the laundry room, but trust me when I say that amazing things are happening there too! Things are moving incredibly quickly now, and with any luck we'll be in the house sometime in the first half of January.

I can't wait to sit down in a nice cozy armchair in my new library with a cup of tea and a book!

Wednesday, December 23, 2009

No more seizures today, thankfully. I'm really, really tired of the kid trying to die on me; I wish he'd cut it out. I've done mouth-to-mouth way more times now than anyone who's not qualified as an EMT should be allowed. I told Connor yesterday after he conked out on us that he'd filled his quota for the year. Hopefully he'll take it to heart and quit it.

Enough depressing talk. I have a fantastic announcement to make: Connor is officially a solid food eater! Today at speech therapy he ate an entire Anna's Almond Cinnamon Thins cookie and a couple of bites of cheeto! The cookies are really thin and they dissolve easily in your mouth-- and they have a strong flavor, which is important for Connor. While he still doesn't chew, he did actually break off a couple of bites of cookie himself, which is really exciting. He also took a couple of sips from a straw sippy-cup, something he's never done before! It was one of the ones that you can squeeze to get liquid to come out, and while he didn't suck on it he did close his lips on the straw and swallowed what I put into his mouth.

I'll have to go out and get a couple different flavors of the cookies and some other easily-dissolving foods to try. It may not be tomorrow though, partially because I don't really want to be out at the store during the last-minute-present-buying zoo and partially because Connor seems to have come down sick. This evening he's been really fussy and is having some pretty nasty stomach trouble; he might have picked something up in the nursery yesterday or maybe when we were up at the hospital for Jer. At any rate we're going to take it easy, and we'll have to miss Christmas Eve services, unfortunately. We probably don't need to be spreading germs along with peace and goodwill towards men. I'll have to curl up with the Good Book and read the Christmas story to Connor as a substitute. Oh well.

Tuesday, December 22, 2009

Jer had a doctor's appointment this morning and while he was there I popped by the store to do some shopping. We had to guesstimate the time that Jer would be finished because I haven't gotten a new phone yet and my old one decides that it can't read the sim card periodically. Today was one of its "off" days. I finished shopping a little too soon and Connor and I had to walk around the hospital for about twenty minutes while Jer finished up, but it wasn't too bad.

One of the things I got at the store was a new collar for Loki. He broke his old collar a few months ago and I hadn't bothered to get him a new one, but with a move in the immediate future I want to make sure that he has tags on him with our contact information in addition to his microchip just in case he manages to escape. I put the new collar with the tags on him shortly after we got home.

Apparently unbeknownst to me the collar emits some sort of kitty psycho waves, because Loki spent the rest of the afternoon charging around the house at full speed, skidding to a stop bare centimeters before walls and gazing around wildly with pupils dilated to the size of nickels. He didn't attempt to paw the collar off or scrape it off on anything; he seemed to think that if he ran fast enough he'd dematerialize and leave it behind. He's dozing on the futon now, totally exhausted, collar still firmly in place.

After putting Connor down for a nap, eating some lunch, and watching Loki run around like a maniac for a while, Jer and I decided it was time to go to the YMCA to work out. This was our first time leaving Connor with the nursery. I think I thoroughly freaked out the woman we dropped him off with.

"Now the important thing to remember," I said as we were signing him in, "is that you have to check for a pulse on him before you start trying to resuscitate him. His seizures look just like cardiac arrest, which he's at risk for too, so you want to make sure you can find a pulse just in case it's his heart that's the problem. But you don't want to do chest compressions if his heart is going because you might crack some ribs."

She gave me a deer-in-the-headlights look. "Let me go get our leader for today," she said, and fled into the back room.

I gave a similar speech to the "leader" for the day, and she asked what exactly his seizures looked like. "Well, pretty much he looks dead," I said. "He's all blue and limp and not breathing, so you can't miss it," Jer added. We told her about his new symptoms to look for too-- the jaw trembling, throat paralyzation, limpness, etc. She said that she thought they could handle it, that they'd page us if they needed us, and after explaining to Connor where we'd be Jer and I left him there and took off for the pool.

We had a pretty good workout. While Jer swam laps I did some deep water running-- an activity that seems to be pretty much identical to dog paddling except that you call it something different so that it's not as embarrassing and you swim at an even slower pace because instead of keeping your hands open you have them in fists. Don't get me wrong; I can swim perfectly well, but I'd heard that deep water running is an extremely good low-impact workout and so I decided to try it out. Between Jer's extremely interesting facial expressions while he's stretching out his feet and attempting to walk in the pool and my frantic paddling and glacial pace, the people in the hot tub across the room watching us probably had plenty of entertainment. After about forty minutes or so I gave up and did the back stroke for a while. Deep water running is a surprisingly good workout-- I'm pretty sure I'll be sore tomorrow.

We packed it up after about an hour in the pool and went to pick Connor up. From what the attendants said it sounded like they basically spent the entire hour hovering over him and interpreting every little movement he made as a possible seizure. Can't say I blame them-- I do that sometimes myself. Another leader was there to meet us and we went over Connor's symptoms again with him. "The odds of the little guy having a seizure with you are very, very slim" I told them, "so I wouldn't worry about it too much. And if he's having one, trust me: you'll know."

Of course when we got home Connor waited about half an hour and then had a seizure. Figures.

This one was a pretty typical one but for one exception. For three or four minutes before the seizure really hit it was like his body didn't really want to work anymore-- he was tracking with his eyes, swallowing normally, and aware of what was going on, but he wouldn't move his arms and legs to push away a tickling or poking hand and he was totally, bonelessly limp; he wouldn't even hold his head up. I had time to get the oxygen out and ready before he passed out. Otherwise it was a very typical seizure for him-- he fell unconcious, stopped breathing, etc. He didn't get quite as blue this time because I'd already started oxygen and began resuscitating him the second he stopped breathing. We got pretty close to the two and a half minute mark with this one, though.

Surprisingly enough after he started breathing again and woke up he was actually in a pretty good mood. Normally he's extremely upset and pretty much inconsolable immediately after a seizure. We speculated that maybe it was because he wasn't as oxygen deprived this time so he didn't have as much of a headache. Who knows?

At any rate, he's asleep now and we'll leave a message with his doctor tomorrow morning to let him know that he's had another one.

Monday, December 21, 2009

Today I sent off another round of Christmas presents (Procrastinate? Me? Never!) and then we headed down to the YMCA for our first Family Work Out time. Well, Jer and Connor Work Out Time, anyway-- I didn't do a whole lot unless you count crab-walking around in three feet of water for 45 minutes with a toddler in my arms as exercise.

There were a number of other children in the toddler pool, and Connor was a little unsure of himself. He didn't care for the noise or the splashing, and about thirty seconds after we got into the pool he was declaring himself "all done" and demanding to get out. I told him we weren't finished yet and drifted over to a slightly quieter corner of the pool so that he could get his bearings. We watched the other children play for a while as he got used to the feel of the water. After a few minutes a little boy around Connor's age came over to us with a ball. With a big smile on his face, he very gently pushed it towards Connor.

"No no no! Away away!" Connor signed at the boy. Oh well-- so much for playing with his peers.

Once the little boy ran off, slightly confused, to play with somebody else, Connor calmed down a little. I eventually got him to stand up in the pool, and after a little while he even started trying to move his feet around himself! We also did some gentle bouncing, some largely unsuccessful kicking, and some movement around the pool. After about twenty minutes Connor became pretty comfortable in the pool (I was even getting some giggles and big smiles) and I decided to up the ante. The toddler pool has a large fountain in one corner that you can stand (or in my case, squat) underneath. Connor and I practiced touching the fountain, meaning that I forced him to put his hand in it repeatedly, and then we slid underneath. "No no no no no!" Connor said, squinting his eyes shut as he felt the spray. We slid back out after a minute or so. I asked him if he wanted to try again. "Don't like don't like all done no away," he announced.

I think he had a definite opinion on the fountain!

While we'll probably be heading to the YMCA five days out of the week to exercise, Connor's skin wouldn't tolerate being in the pool that often. I think we're going to try leaving him to play in the nursery tomorrow. We talked with them today and they seemed pretty confident they could handle an emergency with him; and it's not as if we'll be leaving the building. That way he'll get the chance to do some playing with his peers and I'll get the chance to do some real exercising! Our plan is to have him in the pool about once a week-- any more than that and we'll probably turn his white hair green. I'd also like to spend one day a week in the toddler gym with him. Once he's at school again we'll probably cut some of that out, but since he's not getting most of his therapy during the break the activity will be good for him.

I think it's good to continue to push Connor's boundaries as far as his sensory issues go. That's probably what was really bothering him today. I'm amazed to see how far he's come; he didn't even cry in the pool, and three months ago he would have been bawling and burying his head in my shoulder after fifteen minutes. We'll continue to challenge him and hopefully over time he'll continue to improve!

Sunday, December 20, 2009

This morning I stopped by the house to take a quick look at how things were coming along, and the interior has been painted! The colors look fantastic. There's still a lot to do (floors, some windows, tile, cabinets, counter tops, sinks, etc) and we don't expect to be in by Christmas, but it's really starting to look like a house again. We can't wait to see it when it's finished!

This afternoon Jer and I left Connor with Joanna again and took off on another date! We decided to see a movie and hoped to see Avatar in 3-D, but met with a few obstacles. Unfortunately there's only one movie theater near our area that's fully accessible, and the only times for the 3-D showing at the theater were outside our respite time. I briefly considered forcing Jer to go see New Moon with me, but we ended up going to see Avatar in the regular theater instead. It was good, if somewhat predictable.

We came out of the theater (which is located inside a mall) and were just about to go outside to the car when two policemen raced around the corner and ran out the doors towards the parking lot going full speed, reaching for their weapons at the same time.

We decided maybe it would be a good idea to walk around the mall.

So after twenty minutes or so we moseyed out to the car (no policemen in sight-- who knows what that was all about) and then stopped to pick up some food. Connor was just going down for bed when we got home.

He's been "going to bed" now for about three hours. The little guy took a late nap today, had an exciting afternoon with Joanna, and as a result he's decided he will never, ever go to sleep.

Saturday, December 19, 2009

We were listening to an episode of "The Whistler" tonight on my new radio and one of the old-time advertisements came on over the air. The ad was for a state of the art new technology for those who were embarrassed about wearing hearing aids-- Maico Hearing Glasses. Apparently they were glasses with hearing aids built into the sides. I looked up an ad for them online-- here's a reproduction that's for sale.

The funny thing is that when I googled "hearing glasses" to see if I could find out more about these crazy things, I found several articles about a "new" innovation-- you guessed it. Hearing glasses!

Is it just me, or is hiding the equipment meant to help with one disability inside the equipment meant to help with a different disability kind of silly?

We had a fairly quiet day today. While we went out for a couple of hours around lunch time on a date (our awesome respite care worker Joanna had Connor) Jer ended up with a migraine so we ended up spending the rest of the afternoon at home.

I spent a lot of time listening to my Christmas present from Jeremy-- he gave it to me early, and I'm so excited about it! He got me a NPR radio by Livio. This thing is so cool. I am a total public radio nut; I listen to A Prairie Home Companion and The Vinyl Cafe and The Splendid Table and Car Talk and, well, you get the idea. Unfortunately our apartment doesn't get any reception for my radio shows, so if I want to listen to them I have to drive around other neighborhoods very slowly until they are over.

My new radio gets over 16,000 radio stations, including several stations that only play old time radio shows, which are a personal favorite of mine. I and most fond of the mystery and suspense shows; Connor is very lucky to not be named Lamont Cranston. It's an especially lovely gift because Jer is not a huge fan of public radio but got it for me anyway, knowing that he was condemning himself to listening daily to six hours of back to back episodes of "The Whistler."

Thursday, December 17, 2009

Today after Connor woke up from his nap we drove down to the local YMCA. We'd heard they had a pool with wheelchair accessibility where Jeremy might be able to do some recreational swimming, so we thought we'd check it out. As it turns out, not only did they have two fantastic pools and a hot tub that Jeremy could use, but they also have a number of fitness classes, weight machines, and other exercise equipment that could all be adapted for wheelchair use. To top it off they not only had a toddler pool and a gym that we could use for Connor, but they even had a kid's aquatic class specifically for children with special needs! We bought a membership for each of us on the spot.

Jer is really excited about getting the chance to exercise again, and I'm looking forward to getting some much-needed physical activity too! With the Christmas break coming up I think it's going to be great to have a place where we can take Connor to really work off some energy without having to brave the elements. We had no idea that there were so many resources for those with disabilities available at the Y-- it's not somewhere we would normally think to look, as strange as that may seem. I wonder what other fun places that are wheelchair accessible are out there in our local community that we have yet to explore?

This morning I also got the chance to finally, finally get back out in the yard and pull some more ivy! It's been nearly two weeks since I've had the chance to do some decent yard work, as sad as that is. I thoroughly enjoyed myself; it's amazing how therapeutic it can be to spend a couple of hours ripping vines out of the ground, and it's gratifying to see the progress I've made, even if I've barely made a dent in it (I've still got about 40 feet to go). No doubt the next few years will be spent going back and getting all of the pieces I missed, but that's okay-- I'll eventually get rid of all of it. I also stopped in the house, and they are framing out the fireplace right now! It's really exciting to see all of the progress that's being made-- things are moving right along. I probably won't be able to make it out there tomorrow, I'm hoping that Saturday will be a productive day!

Wednesday, December 16, 2009

With the house continuing to come along nicely, we've started thinking again about the party we'd like to throw once it's completed. As you might remember, Jer lost his wedding ring in one of the hospitals in Afghanistan after he was wounded. We've decided to get new rings and to make them special by renewing our wedding vows in our finished house surrounded by all of our amazing family and friends, old and new, who have supported us over the past few months.

So we've spent the last few weeks ring shopping, and we've found a jeweler to make our rings! We're so excited-- he does fantastic work! We wanted something representative of our relationship, and after doing a lot of research decided on the rather unusual choice of Damascus steel. Jer loves the look of the metal. I feel like that it is not only beautiful but it is complex and many-layered as well as very strong: just like our marriage. Also a lot of work and craftsmanship goes into making the steel, and it starts out in separate pieces that are forged in a fire to become one. I think that's a pretty good analogy for a marriage, right there!

Our rings will be pretty simple bands just as our old rings were, though these will be more intricate just by the nature of the metal (our last bands were plain white gold). Now I have to figure out what I'm going to do with my old wedding band; we'd originally talked about incorporating it in some way into the new bands, but ended up deciding not to do that. I'd like to hold onto it though, as it carries a lot of good memories with it. Any suggestions?

Tuesday, December 15, 2009

We attended a Christmas party a few days ago, and attempted to take our annual Christmas photos with Santa.

You will note I say attempted.

There were a number of children waiting in line behind us, so I was only able to snap these fantastic shots before we had to let someone else have a turn. Part of the problem was that the noise level was pretty high and so Connor was badly overstimulated. Then there was the problem that there was a very distracting Christmas tree he would rather have been looking at. Also Santa was wearing a hat. In Connor's world, hats are horrible torture devices and anyone willingly wearing one must be unbalanced at the very least.

The child holds a similar opinion about gloves. Since Santa was wearing both, no doubt he thought the man a dangerous lunatic. In the first picture here he is using his home sign for "Don't like." He was probably trying to warn the other kids off.

Last year our pictures with Santa were equally unsuccessful. This was because someone in the line had a laser pointer, which Connor was completely enthralled by, and then just before we set him in Santa's lap whoever was playing with it shut the thing off, causing him to throw an enormous pouty fit. Those were some quality pictures, let me tell you.

At any rate, we may or may not attempt pictures with a different Santa later. I think the only way we're going to get decent Santa photos is if we have a private photo session with him, and short of renting a Santa suit and donning it myself I don't think that's going to happen. Besides which, those would not be decent pictures. Those would be weird pictures. I would not make a good Santa.

So in the end we may just dress Connor up, plunk him outside in a park, pile some pine cones around him to draw attention to the festive season, snap some quick shots, and call it good.

Monday, December 14, 2009

Yesterday the first snow flakes of the season fell over our town. They didn't stick around, but melted in the late afternoon, only to refreeze in big sheets of ice during the night. So Connor's school was closed today, Jer's meetings on post were canceled, and we all got to sleep in and have a lazy day inside! It was very nice, though I did almost do the splits taking the trash out to the dumpster.

I am no longer flexible enough to do the splits. It would not have been pretty.

By the afternoon the temperature rose enough that the ice all melted, and so I packed Connor up and we went out to pick up the week's groceries and to do a little thrift store shopping while Jer stayed home and played video games. Connor was a little bit out of sorts so I tried not to linger anywhere too long; he doesn't like changes in his routine and was fully aware that today was supposed to be a school day. I believe tomorrow it's supposed to be above freezing again so hopefully he'll be able to go to school and his mood will improve. Since it's above freezing I'll also be able to start work in on the garden again, though the rain has returned with the warmer weather. Oh well.

We went to the bookstore yesterday and while we were there stopped to get some lunch in the cafe that's attached to it. I always try and order something that I can share with Connor; in this case I asked them to put whipped cream and chocolate sauce on top of my drink. Connor ate ALL of the whipped cream and asked for more! The night before he consumed a large portion of Jeremy's garlic mashed potatoes and a generous dollop of my ice cream. Apparently at school last week he even tried taking a couple of bites of a Cheeto! (He still is very inconsistent about swallowing the food in his mouth at school though-- probably due to sensory overload. Oh well.) It's so funny that I'm excited about my child eating junk food; but trust me, Connor eating any food, no matter what the nutritional content may be, is a very exciting thing. Not only is he eating larger quantities of what we're feeding him, but he's really improving when it comes to experimenting with textures and with thicker foods.

I think having better torso control due to his growing ability to sit independently is helping in a lot of other areas of his development as well, including eating. It's just so amazing to see the kid lunging at the spoon and taking a real bite without needing major prompting and then swallowing instead of holding the food in his mouth forever. He even asks for more! The really interesting thing is that he is much more likely to try a food if it on Jer's or my plate and he sees us eating it rather than if it's something on his plate. I think Jer and I will have to start adding a lot of thick sauces, bisques, curries, and pureed foods to our diet! He's come such a long way in the past few months, and he continues to improve every day. While it's not likely that he'll ever learn to chew (he doesn't move his move side to side at all, and is possibly lacking the nerves to do so) it would be fantastic in a few years if he got to the point where he didn't need the g-tube for his nutrition.

Now if only he'll get comfortable enough at school to actually swallow the food they're putting in his mouth there . . .

Sunday, December 13, 2009

Now that Jer can keep his feet down all the time instead of having them elevated, he's able to fit into some smaller spaces. I'm excited to tell you that a few days ago he was able to actually make it into the bathtub (using a sliding board to get onto a bath chair) to have a shower for the first time since August! No more sponge baths! He was very happy about it, and it was a very long shower. Can't say I blame him.

We've started talking a little bit more about plans for the future. Now that Jer is able to start doing some more exercises (Once they find him a pool that is warm enough, that is!) and is able to actively move forward on his journey to walking again, it no longer feels like we're stalled or waiting; we can start thinking about what we'd like to be doing a year or two from now.

And we think what we'd like to be doing in a couple of years is to be welcoming a brother or sister for Connor into our lives.

We think the timing will be right; a year from now we'll be firmly ensconced in the new house, Jer should be as recovered as he's going to be and will know exactly what he'll be doing job wise, and if by the time we make it through the adoption process Connor will be five years old.

Jer and I have known we wouldn't have any more biological children since we first received word that he is the carrier for Connor's genetic condition. We only have a 25% chance of having a child who has a normal genotype. We have a 50% chance of having a child with either Connor's condition or its genetic opposite, though it's not likely that all of those children would survive to term (for a more in-depth explanation, look here) and a 25% chance of having a child who would be a carrier and thus have to make all of the same decisions that we've been presented with if they chose to have children. While we would be fine with parenting another child with special needs, we feel like there are already a lot of kids out there who need families and we don't really feel a burning need to have another child who is biologically related to us. We both absolutely want more children, however, though we're divided on how many-- Jer would be happy with two, and I'd love four, but either way we don't want Connor to be an only child. So we've decided to adopt.

We'd like to adopt another child with physical special needs. It makes a lot of sense to us; we're already very comfortable with a wide variety of medical conditions, we'll be completely set up in our new home for a child with potential mobility impairments, we know sign language, and there are a lot of children with special needs out there waiting. We've done a little soul searching and decided that there are really very few medical conditions that we wouldn't be comfortable with-- total blindness, because our kids would never be able to talk to one another (Connor doesn't have the motor skills to fingerspell into a hand), moderate-to-severe cognitive impairment (we want our next child to grow up and LEAVE the house), severe behavioral issues (Connor can't defend himself) and terminal illness. Otherwise we're good with just about anything; we could care less about ethnic background or gender. Now that we're starting to talk about the future again we're beginning to hash out the details.

There are so many choices to think about: international, domestic, or foster-to-adopt? One at a time, or a sibling group? Infant, toddler or child? Open or closed? We know we'd like to keep the kid's birth order the same, so that means five or under, but other than that I think we're pretty open as far as age goes. While domestic adoption would mean that we'd possibly be able to parent from day one, we're not really sure we'd be very good at the whole "advertising ourselves as good parents thing." I mean, I write long and in-depth blogs about poop, Jersings insane songs to our son about about inappropriately named stuffed animals, and while Connor is very cute his list of medical conditions can certainly be intimidating. Jer and I aren't sure there are a whole lot of birth mothers (or any) out there who would look at our crazy lives and think that we're the perfect family to parent their child. There's also the fact that we feel like there are multiple families oftentimes who would like to adopt those children, and there are a lot of kids who are just as wonderful that are waiting for families. At this point I think we're leaning towards foster-to-adopt. Our big issue would be that we'd have to only accept a child who was completely legally free, as Connor wouldn't understand if a child entered our home and then left it again. While international adoption would be great too, and there are certainly a lot of kids waiting, we're not sure how comfortable the other countries would be with Jer's potential disability, and also they are somewhat cost prohibitive.

So we'll have to see. But we definitely both have itch; Jer and I point out cute children to each other while we are out and about, we love to borrow our friend's children whenever we can, and we spend quite a bit of time talking about it. It's so hard to wait.

I think if we knew for sure what Jer would be doing in a year we'd start the process now!

Saturday, December 12, 2009

I thought I would share the touching obituary my Aunt Laura wrote for my grandfather with you. While no obituary could ever begin to touch on the full scope of a man's life, it does give you a sense of the kind of person that Papa Daddy was.

Dr. Charles A. Richardson died at home with his wife of 65 years at his side on Wednesday, Dec. 9, from complications of longstanding heart disease and a recent stroke.

Visitation is at Restland Funeral Home on Monday, Dec. 14 from 6 to 8 PM, and a memorial service will be Tuesday, Dec. 15 at 12:30 PM at the Wildwood Chapel at Restland.

A resident of Richardson for 54 years, Richardson was a community and business leader whose legacy includes service to the city’s schools, library, hospital, parks and recreation facilities. In the early 1950s, Richardson worked for the Dallas County Health Department and taught at Baylor Dental School, then began 25 years of private orthodontic practice in Richardson. In middle age he returned to school and took a degree in finance, then in 1974 organized Richardson National Bank, and later established one of the earliest of Texas’ bank holding companies.

Richardson was elected to the board of the Richardson Independent School District in 1968 and served throughout the 1970s. In the early 1960s he also served on the city’s parks and recreation board and on the local hospital board. In later years he was a member of the board of directors of H&R Block. A 32nd degree Mason and a Hella Temple Shriner who worked with DeMolay, he was also active in other civic and professional service organizations.

In his private life he was a man of boundless curiosity and fierce intelligence. He had played football in high school and boxed in college, and always maintained an imposing physical presence and a high degree of athleticism. He took up downhill skiing after his 70th birthday, when he became eligible for free lift tickets: he was thrifty all his life. He was a passionate outdoorsman, a hunter and fisherman who passed on his enthusiasm and skill to his children, grandchildren, and many friends. A master gardener, he shared the harvests of his fruit trees and vegetable gardens with friends, family, and the local food bank. He loved to barbecue, choosing his smoking woods with care and creating delicious, spicy feasts to serve his many guests.

He had a tender heart for animals and was unfailingly kind to the numerous, occasionally bizarre, creatures that his four children brought home. He especially loved the Labrador dogs, Count and Kate, that shared his old age. Richardson was born July 12, 1923 in Saratoga, Texas, the youngest of the five children—two girls and three boys-- of Lemuel Archibald and Sally Lee (Wright) Richardson. His boyhood in Cleveland was marked by poverty and hard work, as well as by dangerous, unsupervised adventures in the Big Thicket of East Texas, which became the stories with which he regaled his children and grandchildren. He went to work at the age of five, washing dishes in his mother’s café, and by age eight was an employee of wide experience. He was, variously, a bootlegger's runner (hiding the prepaid "orders" at designated spots around town and hidey-holes near railroad tracks), a carpenter's helper, short-order cook, and postal worker. In late adolescence he ran a few slot machines and rode the rails around the state.

A regular student at the University of Texas at Austin, he met Gene Marie Davis in 1942 on the first day of summer school physics class at Sam Houston State in Huntsville. Drafted into the Army and sent to dental school under the accelerated program to meet war demand for medical personnel, Richardson married Davis in August 1944 before he was shipped overseas.

Stationed in Saipan, he formed warm friendships with his Chinese Army colleague Dr. Zhang (also part of the occupying force) and with Chamorro fishermen, who took him and his young wife along on numerous expeditions. Here begin his intense, lifelong interest in Asia, which led him in his 70s to begin learning Mandarin and to travel to Shanghai to study. When China reopened to the west with the end of the Chinese Cultural Revolution in 1976, he reconnected with his friend Zhang. Eventually he sponsored the immigration to the US of Zhang’s god-daughter, Cho Ping, who became an integral member of the Richardson family.

He and his wife traveled extensively in the US and in Latin America, and made extended visits to friends and family in South and East Asia, Europe, Turkey, Egypt, and New Zealand. They rode hard sleepers across China, and drove from New Delhi across Pakistan to the Chinese border. Everywhere they went, Richardson met the unexpected with interest and aplomb. At one point, visiting friends working in a leprosy hospital in Nepal, he was asked to perform emergency oral surgery without anesthetic or even a proper drill, which he did. Successfully.

He is survived by his wife, Gene; four children-- Linda (James Gillespie), Laura (Rone Tempest), Will (Teresa Kanan) and Dee (Rob McManamy); his god-daughter Cho Ping (Ning Ling); five grandsons, six granddaughters, two great-grandchildren; two nieces, three nephews, and many grand and great-grand nieces and nephews.

I mowed the lawn today at the new house. While I was out there three people stopped their cars, rolled down their windows, and told me how happy they were to have new neighbors and that they hope we'll move in soon. I can't believe we found such a great neighborhood to live in! Since the house we bought was one of only three houses for sale in all of Puyallup that would have met our needs (with remodeling) it's pretty incredible that we ended up in such a great area.

We received some more fantastic news about the house; a lot of the furniture is being donated too! This is extremely exciting as Jer and I currently have, for a couple that's been married nearly six years, an astonishing lack of furniture. Or at least an astonishing lack of furniture that will work with a wheelchair and is not composed entirely of MDF-coated chipboard. With 1,000 more square feet of living space we've got plenty of room to fill; though I have no doubt that with my thrift store shopping habits I could pretty quickly change that. I can't wait to see the way things turn out!

We've decided that even if the house is done by Christmas we'll take an extra month to move in; that way we won't be rushed, and Connor will have the chance to get used to the new space. He doesn't handle change very well.

We went Christmas shopping today with the little guy, and the mall has these gigantic Christmas trees up with red and silver balls all over them placed about every thirty feet or so down the main corridor. Every time we'd walk past one of these trees, Connor would go totally nuts.

Thursday, December 10, 2009

Thanks, everybody, for your kind words. It's hard for me to be here and not in Texas, as in addition to the Feed Everybody gene I inherited from my parents I also got the Run Over There And Help gene that kicks in whenever something like this happens, which is making me desperately want to drop everything and get on a plane. I'm missing my family right now and wishing I could be there, but with Connor's recent seizures and Jeremy's lack of ability to use a public restroom it's just not feasible right now. Everyone in the family understands, of course, but that doesn't change the way I feel about it. That's the way it goes sometimes, I guess.

We did hear from the neurologist yesterday; he upped Connor's medication again and then told us he'd put in a referral for Connor to have another video EEG done up in Seattle. We aren't sure when that will happen yet, but it's a step in the right direction. Hopefully the new medication dosage will help stave off the seizures and we'll be able to go without adding another medication to Connor's regime.

The house is coming along well; the gas line went in this week so now the house has heat! It feels great in there right now. When we stopped by today Santiago was putting up the drywall, and it looked fantastic! We have a pantry now, the kitchen has walls again, and the master bathroom was taking shape while I was there. It's so exciting to see the way the house is coming together. With the crazy couple of weeks that we've had I haven't had a chance to get over there to work at all so it's been a while since we'd seen it. Tomorrow I'll be over there rain or shine, though-- the lawn needs mowing and the weeds are all coming back with a vengeance, so I need to do some clean-up before I can start back in on the ivy again. I'm glad for the work, though, as it will no doubt be a big stress reliever to be able to just lose myself in the rhythm of gardening. Now that we have heat it will be a lot easier for Jer and Connor to hang out in the house while I get some work done there in the afternoons during the week or on Saturday, so hopefully I'll be able to spend a lot more time over there in the next few weeks. I'll be sure to bundle up, as it's very cold outside!

I'll also be heading over to our storage unit some time in the next few days. While we won't be having a big Christmas this year I do want to put at least a few things up to show the holiday spirit. I'd like to get out our nativity set-- probably the one that Loki doesn't like to give baths to-- and maybe get a two or three foot tall rosemary tree or something to plant later instead of a big Christmas tree, since we don't really have room for one in the apartment. If I get us a wreath to make the house smell good it will be placed somewhere completely cat proof to stave off last year's disaster. I can't wait to see what trouble he'll get in this year to make up for the lack of Christmas decorations to shred!

Wednesday, December 9, 2009

Every year around Christmas time when I was growing up my grandfather would adjust his glasses, pull on his heavy red plaid flannel coat and his boots, and we’d head down to the local Christmas parade. We’d usually get there a little early and find a place to stand somewhere up close to the front. The high school bands would march by, the floats would pass, and all of the little kids (and some not so little) who were throwing out candy to passersby would run up to us, place a double handful into his hands, and whisper to him what they wanted for Christmas. He would nod gravely to the children and the candy would disappear with a faint crinkling sound into the large pockets of his coat. I used to think it was horribly unfair that my grandfather ended up with so much more candy than I did just because he looked like Santa Claus.

And he did look like Santa Claus; from his rosy cheeks and his white beard right down to the gold Turkish elf-shoes with the turned up toes he kept on the mat by the front door. Rather on the thin side for a Santa, perhaps, but one glimpse of his mischievous grin would convince almost anyone that Kris Kringle, when he wasn’t delivering presents to children across the globe, masqueraded as a retired dentist-turned-gardener who lived in a mid-sized suburb of Dallas with his wife and yellow lab, enjoyed fishing, spoke Chinese, and played a mean game of pool.

My grandfather passed away quietly today after a slow decline over a period of months. I won’t be able to make the funeral, but my heart will be in Texas this weekend with my grandmother, my father and his sisters, and the rest of my family.

Tuesday, December 8, 2009

This afternoon Jeremy, Connor and I drove up to the hospital where they did his surgeries for his big follow-up appointment. They took some x-rays and said that everything looks like it's doing well. Then they gave us some great news; Jer can start doing some weight bearing activities! They'd like him to start out in the pool. Once he's comfortable there and the doctors think he is ready he can move to the parallel bars, and from there he'll be able to move to crutches. Jeremy is fired up about getting in the pool-- I think it's going to be his new hobby. He used to run marathons, but those are sort of out now, so he's talking about taking up swimming as his cardiovascular activity of choice. All the pools he'd be using this time of year are indoors, so it's fine with me. Maybe Connor and I will join him sometimes! While it'll still probably be a good while before Jer is able to walk again, we're taking the next step towards him being back on his feet. That's a really exciting thing!

So we were totally stoked about this news, and while on the way home we decided to stop by our favorite sushi place in Puyallup to pick up some dinner as a treat. I left Jer and Connor out in the car and went in to get our food. I brought our yummy-smelling box back to the car, handed it to Jer, and was setting my purse in the front seat when Connor abruptly went very quiet and slumped over in his wheelchair. He was having another seizure.

This was one of the ones that we're used to seeing with him, in which he stops breathing and turns blue. I ran around the car, threw open the side door, unbuckled him and laid him down across the front seat. I only had to give him a couple of breaths before he started breathing again, though after I got him breathing the first time he stopped again a few seconds later and I had to give him a couple more. This seizure was really fast-- it maybe only lasted about half a minute or so, and the only trembling I saw was right after I'd gotten him to start breathing the first time-- his jaw quivered for a second and then he stopped breathing again and the motion stopped at the same time. He also showed no awareness at all, unlike the last two seizures when he was conscious and very obviously knew that something was going on (up until he stopped breathing, anyway).

While I'm glad that this seizure was a very short one and seemed to be about on par with his "usual" seizures, I am concerned about the fact that this one came only four days after the last one. We still haven't heard from the neurologist (don't get me started) so I'll be calling them again tomorrow morning and if I don't hear from them by Thursday I'll be making a trip down there. It's obvious that Connor's seizures are no longer controlled by his medication and it's imperative that we get this figured out as soon as possible. I'm sure they have a lot to do, and I know they are still within their "three business days" window to get back to me so according to the rules they haven't done anything wrong, but it's not like I'm calling about how Connor stubbed his toe or something. Maybe it's more of a priority in my mind than it is in theirs, as they probably have people calling in about seizures all the time, but I don't really care at the moment. I'm angry anyway. Oh well.

So all in all it was a roller coaster of a day. I have a plate of warm brownies, a good book, and a mug of hot cocoa sitting next to me right now though, so at least it's ending on a good note!

Monday, December 7, 2009

No call from the neurologist today. No seizures today either thankfully.

Today I took Connor to the store and bought him some new heavy winter clothing. I got him a new hat, as he's outgrown all of the ones we had that tie under the chin. We have several that just sit on his head (including an absolutely adorable tweed cap that makes him look like a cherub-cheeked urchin straight out of Dickens) but none of them stay on for more than about 20 seconds, which makes them rather ineffective for any practical purpose. The ones that tie under the chin stay on at least long enough to get him inside, especially if he has on his mittens, which apparently weigh somewhere around 80 pounds a piece. You put them on his hands and he is completely unable to move them until you take them off again. Every once in a while he'll forget and absentmindedly bring a hand up to his face, but when he sees the glove he shoots you this horribly betrayed look and instantly the glove weighs 80 pounds again. He refuses to sign with them on so I have a whole lot of one-sided conversations while we're outside.

He needs them on though, as we're in the middle of the first real cold spell here. It's supposed to get down to 15 degrees tonight, and so we're all bundled up. Jer's feet are really feeling the cold-- I tried to find him some slippers today but the size I got him was too small, so I'll try again on Wednesday when I have the time. It's likely that he'll be able to predict sudden weather changes from now on.

I also picked Connor up some heavy lined booties. They're supposed to be indoor only slippers, but since he's not walking on them they'll work well as everyday shoes. It was interesting to note that when I went to the store I found two aisles of warm boots for little girls in every style and size, and no little boys boots. None. Apparently little boys do not wear boots. They wear sneakers, which were either blue and red or blue and orange, depending on whether or not they had Spider-Man or Transformers splashed all over them. His temperature regulatory problems have made his feet feel constantly like little blocks of ice, and I worry that sneakers aren't going to be warm enough. So since I couldn't quite justify getting him a pair of girl's boots (even the black ones were lined with pink fur) I just got him some slippers. I'm pretty sure they'll work, and I'll keep an eye out for some more conventional footwear when I'm out looking for slippers for Jer.

The cats are noticing the cold too; they've actually called a truce and are sleeping in a little pile together, generally under whatever blankets we've left lying around the living room, which makes for an interesting guessing game. You never know whether or not the piled blanket you are approaching contains a cat or not, so all of the blankets remain on the floor as if you disturb the cats they will give you the Look of Death and you take monster steps in an attempt to avoid possibly stepping on them. It is especially fun to be right in the middle of stepping over a blanket Very Carefully and, when caught in the most ridiculous position, to look up and see both of the cats watching you with a vaguely disdainful look on their faces. Nothing like a cat to put you in your place!

Sunday, December 6, 2009

I'm still in that jumpy, paranoid state I get in whenever Connor has a seizure. It takes me a while to quit freaking out every time he looks at me with a half-way funny expression on his face. Really right now it feel like a count-down. How many days will it be between seizures? How soon will we be able to get in to see the neurologist, and how long will it take us to find the right combination of medications to make them stop? Every time I start to get a little complacent and relax he comes up with some new dramatic way to try and die on us. It does keep one on one's toes.

My brother-in-law's visit ends tomorrow, and I'm sad to say that we didn't really show him anything at all of Washington state other than the inside of the hospital, the grocery store, and several local pharmacies. We've been sticking fairly close to home as we don't want to be out of close ambulance range, and we can't really spend any time outside with Connor because it's below freezing and he's having such substantial temperature issues. Oh well. Hopefully my brother-in-law will be back to visit in a few months and we'll get the chance to show him more of the area!

We have an extremely busy week coming up. One of the most notable things happening is that Jeremy will be heading back to the hospital for an appointment where they will hopefully clear him to start doing some weight-bearing activities. We'll just have to see what the doctors say, but we're hopeful that he'll be able to at least start putting a little bit of weight on his right foot. I'll let you know what they say!

Saturday, December 5, 2009

Connor's hospital doesn't have a neurologist on call on the weekends, so I called and left a message that they should get on Monday. In the meantime we went into the pediatrician's office, which thankfully is open on Saturdays, and got another prescription for Diastat. Of course they didn't carry it at the hospital, so we had to try a couple of different pharmacies but we did get it filled today. I feel a lot better now that we have it.

Hopefully the neurologist will call on Monday and get us in. I'm sure until we actually have a game plan I'm going to be totally paranoid and every time Connor so much as hiccups I'm going to freak out. Connor wasn't quite himself today-- he seemed very tired-- and so every five minutes or so either Jer or I asked him if he was okay. He'd pop back up long enough to assure us that he was all right before slumping over in his chair again. Talk about nerve-wracking. If we aren't careful he's going to learn that slumping over and going limp gets him immediate attention and he'll start doing it all the time. Wouldn't that be fun?

We'll probably take it pretty easy until we get the chance to see the doctor. Right now nothing has changed-- he's still on the same medication dosage-- so we don't know how long we'll have between seizures.

Friday, December 4, 2009

Today was not a very good day, unfortunately. Connor had another seizure-- his longest ever-- and we had to use his Diastat for the very first time.

Jer's brother was coming in to visit us for the weekend, and it was about five minutes before I had to leave to pick him up. I was getting Connor's stuff ready to go, and noticed that he was making some strange grunty/wheezy noises. Connor was sitting in his chair next to Jeremy, and he was looking down at his feet. I asked Jer if he was okay. Connor would still move his arms and legs and was still responsive, so Jer said that he thought that Connor just "needed to go potty." After two or three more minutes of listening to him I came over and lifted him out of the seat.

Connor was still responsive-- he would track, blink if you blew air in his face, etc, but he seemed to be having some difficulty breathing. He was also really, really drooling, as if he wasn't swallowing at all. I got him a new diaper and went to change him, but he was totally dry. Something just didn't seem right. A few seconds later his jaw started to tremble and we knew he was having a seizure.

I set him in Jer's arms and ran for his oxygen. After we put his nasal cannula on he stopped having trouble breathing, but the trembling progressed into a rhythmic jerking of his jaw. He was still weakly tracking and could move his arms and legs. Jeremy grabbed the camera and started video taping so we could show the neurologist what he was doing.

We didn't really have any instruction on what to do here-- it was kind of a judgement call. Normally we'd administer the Diastat two and a half minutes into a seizure, but normally during a seizure he's not breathing, which wasn't the case here, so we weren't sure if we should give it at the same time or wait a while longer. In the end we waited until after he'd been trembling and/or jerking for five minutes. Right before I gave it to him he stopped breathing and went unresponsive and blue on us. I did rescue breathing until he came back, but I didn't have to do it very long as the seizure stopped about a minute after I gave him the medication. We're unsure exactly how long the whole incident was, but from the time I noticed him making the odd noise to the time he started breathing again it was probably somewhere around eight minutes.

We were told to call 911 any time we had to use the Diastat, so Jer did that while I performed rescue breathing. The EMTs came and checked him out. Since he was breathing well (breathing is a potential problem with Diastat, which is a respiratory depressant) and we seemed to know what we were doing they decided he could stay at home rather than going to the hospital. Connor has been asleep ever since.

Of course it's a Friday. Also Connor's neurologist is out of town until the end of next week. And we have no more Diastat. This is not a wonderful situation to be in, but we'll work on it. What this means, though, is that Connor's current medication is no longer doing its job. That is a scary, scary place for us to be.

Please keep Connor in your prayers as we try and figure out where to go from here.

Thursday, December 3, 2009

Connor had his allergy testing done this morning. The doctor listened to my crazy story involving Connor's possible reaction to lavender, and then asked about some of his other medical issues. She told me that she wouldn't be surprised if lavender was the culprit, as it is "extremely strong stuff" and it's pretty telling that since we've purged the house of lavender he's had no major outbreaks of hives. However she went on to say that they have no specific skin test for lavender, and that while they'll use a mixture of lavender and saline to test his skin she doesn't necessarily expect any results given some of Connor's other strange medical conditions. She also recommended we test some common allergy triggers, such as dust mites and pollen, to see if he's allergic to anything else.

So they tested a variety of different common allergens in the area on Connor's skin. This is the first time I'd ever seen an allergy test administered, and they're pretty interesting. First they labeled the inside of Connor's arms with a pen as to which test they were doing where. Next they picked up a sort of grid with tiny pins on the end of little sticks. Each pin was dipped into a different allergen. They pressed the pins down on Connor's arm and each tiny pin pricked an individual area, inoculating it with a drop of the allergen. Connor, surprisingly enough, was perfectly fine with this; he didn't show much of a reaction at all. It's supposed to itch like gangbusters, but he seemed perfectly comfortable. Then they set a timer and we waited to see if anything would show up. If after the time was up you could feel a raised bump and see a red spot where an allergen had been placed, then that was considered a positive test.

They tested Connor for ten different common allergens and also crushed up some lavender and tried that too. He was negative for everything, including the lavender, except for one thing on the list.

Cats. Lovely.

We discussed this pleasant development with the immunologist (they are the doctors who deal with allergy issues in our hospital) and she told us that since Connor's not stuffing up or having red or watery eyes the second we walk in the door of our apartment, and he doesn't seem to have any adverse reaction after playing with Cricket and Loki (or any other cat, for that matter), that she's not concerned about the reaction. She suggested trying to cut down on the areas where cat hair or dander could be trapped, and was delighted to hear that our new home won't be carpeted, as carpet is apparently a hotbed for allergens. She also told us to continue to stay away from lavender and, if possible, other really strong perfumes and herbal scents as well since they might also trigger a reaction. She said she's seen patients who persistently have a negative skin test to a substance even while they're going into anaphylactic shock from contact with that substance. Crazy.

So in conclusion, Connor tested negative for something he has a major reaction to and positive to something he doesn't. Isn't that just our little guy to a T?

We managed to get Connor a swine flu shot while we were there, so it wasn't a totally wasted day. Oh well.

Wednesday, December 2, 2009

Yesterday morning Jer and I stopped by our favorite coffee shop in downtown Puyallup to grab a cup of coffee and some breakfast. We go there often enough that we're considered regulars; the owner greats us by name and gets our drinks started before we order our food.

While they've got great coffee there, this post is not about Central Perk, the aforementioned coffee shop. This post is about the public parking lot just down the street.

Now, Puyallup has a free public parking lot in the middle of their downtown area, which is fantastic. However, the handicap spot in the parking lot is a regular handicap spot and not a van spot. For those of you not familiar with the difference, a van spot has at least an eight foot "no parking zone" next to it. This allows enough room to deploy the ramp.

Our van has a bumper sticker on the window located on the ramp side of the vehicle that asks people not to park within eight feet. However, no one ever looks at this thing because invariably we'll get back to the car and even though the parking lot is half empty somebody has parked right next to us. Yesterday morning was no exception. Whenever this happens it means that Jeremy and Connor have to go back to the sidewalk (since Jer can't push Connor out of the way and push himself if a car is coming), and I have to get in the van and drive it to a different part of the lot that has two spaces open next to each other so that they have room to get in. Then after I park the car I have to get out and walk back to where they are waiting so that I can grab Connor.

It's completely understandable if the lot is full and there are no other spots for someone to park next to us. No big deal-- it only takes five minutes or so. But it does get a little frustrating when there are fifteen other spots open in the lot and we come back to discover someone has parked right next to us again. At least it was relatively nice outside yesterday.It's especially frustrating when it's 38 degrees outside and raining. So we decided we needed to come up with a solution to this problem.

First we discussed keeping a traffic cone in the trunk of the car and putting it in the space next to us when we parked. But people move cones out of the way or run over them all the time. Then we thought about training one of the cats to guard the spot. No dice-- people move them out of the road or run over them all the time too. Plus our cats wouldn't train too well-- Cricket is terrified of cars and Loki would probably try to get the car to pet him. So we scrapped that idea. Finally after much thought we hit on the perfect solution.

We'll use a duck.

Think about it-- who runs over ducks? No one, that's who. Ducks cross the road all the time, often at ridiculously slow paces, and nobody runs them over. People actually put up signs on the off chance that ducks might be crossing the road, so you know not to run them over. Who does that for cats? Also we could teach the duck to guard the car, which would deter would-be burglars quite handily. Those things can bite hard. No one would move the duck out of the way for the same reason. We'll just get it a Tupperware container full of water and keep it in the trunk.

And if we were trapped in the desert we could cook duck eggs on the hood of the van while we waited for help to arrive!

The only other animal that can sit in a road with impunity and not get run over that we could think of is a cow. But a cow, even a very small cow, would not fit well into our van with the wheelchairs loaded in. Cows would probably be better put to use guarding airplanes, a job which ducks cannot do. Ducks and airplane turbines do not get along too well, but you never hear about cows being sucked into those things, so they'd be perfect for the job.

Tuesday, December 1, 2009

It was a very busy day today-- a variety of events and meetings kept us running around all over the place. Jeremy had his initial "what the heck are we going to do with you while you are healing" meeting, and we talked about a few different options, including him taking some online classes in the pursuit of a post baccalaureate degree or possibly working at the Warrior Transition Unit.

For those of you not familiar with the Warrior Transition Unit (WTU), let me give you a brief explanation. When a soldier is injured and they can no longer perform their assigned duties, they are assigned to the WTU in order to focus on the recovery process until they are healed, at which time they either go back to their original job, transfer to a new job, or are medically retired with a severance package. They would give Jer a temporary job that he would be able to perform in his current condition. Now that we have an idea of some of the options Jeremy has, he'll do some research and make a decision as to what he thinks the best path is going to be for the next few months. I think right now he's leaning towards doing some additional schooling; we'll just have to see.

This evening we went to a meeting for the families of the deployed soldiers in Jer's unit. One of Jeremy's commanding officers was back here on leave and gave the spouses a chance to ask questions and hear about how their soldiers are doing. At the meeting, Jeremy was awarded a Bronze Star for his actions in Afghanistan! He has already received a Purple Heart and an Army Commendation Medal with Valor for his time over there, so this was a pleasant surprise for him.

About The Author

I'm Connor's Mom. That pretty much explains everything. I mean, raising the epicenter of cuteness in the universe is tough, but it has its moments, all right.
I should probably mention that Connor has a submicroscopic, subtelomeric unbalanced translocation 46xy der t(1)(1;15)(q42;q26.2)-- an extremely rare chromosomal disorder. He keeps me on my toes!